VASCULITIS AND VEINS

[Oztrax]

Can vasculitis affect larger veins ?

I think the larger veins in my scalp are inflamed and very sore, can trace them under the skin and seem to correlate with vein location not arteries

[DorsetLady]

See this -

healthline.com/health/foreh...

But please make sure it isn’t arteries, which could indicate GCA.

neurologynetwork.com.au/neu...

[Oztrax in reply to DorsetLady]

Thanks DL, couldnt get any positive diagnosis for GCA from my GP, hospital diagnostic specialist and an ED doctor, they dont think my ESR at 26 and CSR at 33 is high enough even with a constant headache to qualify, and then inflamation markers started dropping after the appointments. Got a weeks supply of PRED 25 mg currently for the headache which responds only to ibrufen, not aspirin or paracetymol. By respond I mean I can at least get out of bed and situp and do things outside at times, but headache is always present since it came on suddenly on 12th June. Hospital Diagnostic specialist has tested for ANCA, ANA and kidney issues, so I guess he is leaning towards ANCA vasculitis.

Sort of on my 3rd flare up over the last 3 months, a week or so lying down and sometimes wake up next morning feeling a lot better, over the last 3 months maybe 3 weeks (not consecutive) I could operate at 80% or so.

Very limited in my home city for specialists, i worked out diagnosis process goes like this:

GP refers you to Diagnostic Specialist GP (5 week wait): Diagnostic Specialist sends report and test results to GP (still waiting after nearly 2 weeks): GP then sends reports/test to Rheumatologist (has not happened yet but say 4 to 6 weeks minimun); Rheumatologist decides on more blood tests/scans; and so the endless cycle continues while I suffer and at times consider going back to the ED with a migraine headache and sit in a chair for another 8 hours minimum to get yet another meaningless diagnosis like "cervogenic headache" and by then all I want to do is go home and go to bed!!!!!!!!!!

But all is not lost , I decided to get a referral privately to an Endovascular Surgeon, I figured he knows more about arteries and veins than all these other doctors put together, am confident he will at least physically examine my scalp inflamation which are now like road maps all over over my head, do some sort of angiogram, MRI scan and even has the capability to take a biopsy. Then I take the biopsy positive result (GCA,ANCA or some other type of vasculitis) back to my 3 useless doctors and finally start some treatment before my organs are permanently damaged.

[DorsetLady in reply to Oztrax]

CRP at 33 is high (mine was 25. 2 and definitely had GCA) ESR not so much -but as we always say on another forum symptoms are the key -not just blood markers.

The fact that headaches don’t respond to paracetamol nor aspirin indicate they are caused by inflammation. ..hopefully the Endovascular Surgeon will come up trumps.

[Oztrax in reply to DorsetLady]

I agree DL, vascular surgeon is my secret weapon for diagnosis

[DorsetLady in reply to Oztrax]

Fingers crossed..

[AtopicGuy in reply to DorsetLady]

Just to clarify "The fact that headaches don’t respond to paracetamol nor aspirin indicate they are caused by inflammation." Aspirin is an NSAID (a non-steroidal anti-inflammatory drug, as is ibuprofen), and it can be used in the treatment of GCA (see 2022 paper below). Steroids, of course, remain the first-line treatment for GCA.

ncbi.nlm.nih.gov/pmc/articl...

[DorsetLady in reply to AtopicGuy]

I was on aspirin (along with other meds) for high blood pressure for a number of years before GCA raised its head -Did absolutely zilch for the headaches in my case. ..nor for any other inflammation over the 18 months it took me to get diagnosed

It was used in GCA for many years, but has definitely fallen out of favour with many in recent years as your link states.

[AtopicGuy in reply to DorsetLady]

Indeed. Corticosteroids are the first-line treatment for GCA for a reason: they attack the auto-inflammatory process at source, and they produce a stronger anti-inflammatory response at tolerable doses.

[DorsetLady in reply to AtopicGuy]

I know, I’ve been there, got the T-shirt, wrote the book… blah, blah, blah…

[Obscureclouds in reply to Oztrax]

I didn’t have any symptoms that I felt related to GCA . After an autoimmune illness last year I still had links to a brilliant Respiratory Consultant and when I had a repeat attack of extreme fatigue in July she called me in for blood tests which did show a rise to my markers so she arranged a PET scan. After that I received a call from Rheumatology to say that the scan showed GCA and they immediately put me on 60mg of Steroids. By that time I had begun to suffer very painful jaws. I can’t remember how many years it’s been since I last had a headache. Also haven’t had the slightest twinge or stiffness in my joints or muscles. It was just fatigue that meant I couldn’t walk more than a few yards unaided. The steroids took 2 weeks to kick in and I just woke up feeling so well. We went out for first time in over 6 weeks and I walked 2 miles at my normal pace then even did some shopping. Within a few days I was back to all my normal activities including walking 5 miles without thinking about it and don’t have any symptoms. It is certainly a very strange disease and seems to vary greatly person to person. I would love to know my blood results from seeing the consultant last week to see if they are back to normal (which is what happened after a massive IV dose of steroids last year) but as they were taken at the hospital they don’t appear on the NHS app. I hope you manage to get sorted.

[GinnyMa in reply to Oztrax]

In 2015 I had a severe headache that neither Advil nor Tylenol helped. I slept in a chair at night because the pressure of a pillow was unbearable. I asked the pharmacist for a suggestion and told her neither meds worked. She said stop both as I was trading one problem (stomach) for some other. I went to my GP finally and told him the pain was unbearable. He suggested I was exaggerating…..No! I told him. He seemed confused and remembered something but had never seen it…..by the time I got home, i had a phone call that he had set up an appointment with a rheumatologist for 9am. The following day. When he heard my symptoms, he sent me immediately to the pharmacist for prednisone. Within two hours the headache was gone. A biopsy of a vein confirmed the diagnosis. My CRP was only 23 …..get this treated or you could lose vision..

[Oztrax]

If i have GCA it isnt fitting the diagnostic criteria well, so I have started examining drug induced vascultits causes of which I have been on 2 of the drugs long term that can cause this and a previous drug that I was on for many years (2 of thes DMARDS). Forgot to mention still trying to work fulltime, trying to make a claim for a sickness insurance policy and calculating retirement benefits and leave so I can still have an income.

Of course I can only do this a couple of hours a day when my headache and fatigue is tolerable

[DorsetLady in reply to Oztrax]

Why isn’t it fitting? You don’t have to have all the symptoms listed - but with constant headaches it should be one of the first diagnosis for consideration.

Please let us know how things go… having lost sight with GCA, I am always on high alert for anything that sounds suspiciously like it…

[AtopicGuy]

Short answer: yes, vasculitis can affect veins, but veins and arteries are rarely affected at the same time.

[Oztrax]

Atopic pretty sure its the arteries but they feel like 1/4 inch wide with the inflamation when feel thru my scalp, thought that seemed large for a scalp artery

[Oztrax]

So am going to retest for HSP70 antibody and get the opinion of the ENDOVASCULAR surgeon, at least it might be a hands on examination. 25 MG PREDNISONE is helping, doesnt fully get rid of headache fully unless I use NSAIDS as well. Only could get 1 week of PRED from GP as he is concerned about my diabetes TYPE 2. But my blood pressure hit 185/124 on saturday and i was more concerned about that, high BP like this makes you feel unwell, tight chest and anxious.